Providing Answers, Support and Hope in Pennsylvania, Delaware and Southern New Jersey

Tonya: 'Life is a Struggle When it Comes to Lupus'

I was diagnosed with Lupus in 1995, by a Hahnemann University Emergency Room Physician. You can say that I’m some what of a unicorn based on the many associates and colleagues that I’ve met, whom took much longer to receive their diagnosis’s. I experienced debilitating symptoms from headaches, chronic fatigue, no strength and weakness in my hands. I developed cotton wool spots in my eyes, resulting in 3 separate laser eye surgeries. I lost all of my hair and it grew back in a completely different texture. I lost so much weight that my skeleton could be clearly seen under my skin. Most of this time, however, I slept through the hours and days as I awaited for what I thought was my impending death.

I’m not sure if it was naïveté’ or indifference to the diagnosis, but I took it in stride. I never questioned the doctors, other than listening to their description of what I had. It never crossed my mind to think about searching for support or learning anything more than what I was told. I simply went home and stayed in the bed for months, no visitors, no interactions, just alone in a bedroom isolated from all of my loved ones and friends. I was essentially bedridden and my body would only retain pedialite, which was meant for infants and after months of not getting any better, I went to see another rheumatologist . My new rheumatologist was a woman, and she immediately put me on a high dose of prednisone, plaquenil, and methotrexate.

Within a few months, I began to get better and gained some weight. Then I eventually returned to work and resumed my career in corporate America. A new perspective and respect for life took hold and I grasped at the opportunity to live with my new normal. Gradually every few years my Lupus would change and so would the medications that I was taking. Through the course of my life experience with Lupus, I have been on every single medication that the doctors could prescribe. This was until, everything stopped working and I was at a crucial part of the fork in the road of complications from Lupus.

I was blessed to become pregnant with my daughter after 4 years of living with Lupus, however, that pregnancy set off something within my system and nothing was ever the same again. The only medication that I could take during my pregnancy was a high-dose steroid (prednisone), which caused skyrocketing weight gain. Unbearable migraines continued, even til today. No matter what I did, I couldn’t find relief. In 2010, I had been climbing the corporate ladder and had graduated with my bachelor’s degree. Unfortunately this health deterioration took its toll and I had to come out of work.  This became a turning point for me as I decided to take control of my health.

I educated myself about my disease, then became an ambassador for my local chapter of the Lupus Foundation of America. I co-facilitate support groups, self-help courses and attend health fairs. I’ve also participated in the Lupus Summit held with Congress every year. My ultimate goal and focus in living with this disease is to be an advocate, to give back to the community that I live and serve and to be a voice when there is silence. I stay on top of what goes into my body and am empowered to avoid things that trigger my flares. I’ve learned about environmental factors that could effect my symptoms and changes that I could make to lessen my exposure from chemicals in foods, health and beauty products, etc.

I am now on Benlysta, which was then first medication developed specifically for Lupus and even though I was completely against it in the beginning. It was a last resort medication from the many final failures prior. But I’m living my best life and looking forward to helping more people live better with it. I’ve healed so much physically and emotionally, my life has changed for the better and I live with intention. There are many helpful apps and websites to help with tracking symptoms, monitoring changes and keeping necessary records about your health and diagnosis’s. I’ve also made the choice to surround myself with people that are for me and support me; people who are willing and able to not only understand my goals but to make them possible.

Lupus does not yet have a cure, but my experience with it has encouraged me to live well with it.